[Victor L]

Best time of day to take multiple myeloma treatments

by Victor L on Wed Sep 18, 2019 1:01 pm

I have been receiving treatment for myeloma for nearly eight years. During my treatment-free periods, I feel quite good, but when I am at the maximum treatment dosage, quality of life can deteriorate. In my experience, Velcade, Revlimid, and Pomalyst have the effect of abnormal sensations in the feet and lower legs. Also, my balance can be affected, making it difficult to walk or even stand still, for example in the supermarket when waiting at the checkout.

Recently I fell down during the latter situation (supermarket checkout), and the staff were then obliged to call the emergency services, and I spent the rest of the day in hospital, which even included an alcohol test by the police! All of the tests were satisfactory.

I would like to share with you my findings for the best times to take medications, I have been studying this for some weeks and it can make quite a difference for the day-to-day life.

My current treatment is Pomalyst (Imnovid, pomalidomide). This commenced in 2016 and has produced satisfactory results. The side effects seem,to follow a curve as you may also find, although not everybody is the same. At the hour of taking the treatment, side effects may be at their lowest, they then reach a peak six hours later, perhaps starting at the three-hour mark and reducing during the three hours after the peak. There may then be a fifteen-hour period with the reduced level of undesirable effects.

Contrary to my original plan, it is by far best for me to have minimal side effects at night, other­wise sleeping can be difficult. During the day, quite strong side effects can be masked and effectively ignored when carrying out normal activities;

As already mentioned, these simple adjustments have improved my quality of life without the need for additional treatments to aid sleeping, etc. I hope others here will share their insights into when they have found it best to take medications.

Victor L.

[GoDucks]

Re: Best time of day to take multiple myeloma treatments

by GoDucks on Thu Sep 19, 2019 10:22 am

Good topic Victor. I am only taking low dose Revlimid (5 mg 14 days on, 7 days off). Even at higher doses, I’ve always taken it at bedtime. It doesn’t interfere with my sleep at all. Dex is another story, but I only have to deal with that now every 3 months when I have my Zometa infusion.

[Victor L]

Re: Best time of day to take multiple myeloma treatments

by Victor L on Fri Sep 20, 2019 9:31 am

Thank you GoDucks. I received Revlimid back in 2012 and I remember taking it in the evening without any adverse effects. My Pomalyst (Imnovid) 4 mg treatment has been less forgiving because of the neuropathy, which can impede my sleep. As mentioned, simply changing from evening to morning for my treatment time has improved my sleeping very noticeably. Even minor neuropathy is, for me, worse when trying to sleep.

[Ron Harvot]

Re: Best time of day to take multiple myeloma treatments

by Ron Harvot on Fri Sep 20, 2019 1:39 pm

I am on Velcade, Revlimid, and dexamethasone (VRD) and have been for a long time. The dex is once a week the same day I get my Velcade shot, which is Wednesday. I take 20 mg a week and take it on Wednesday night. I always take Revlimid in the evening. I have been fairly lucky as I have not had any peripheral neuropathy issues. The dex is the hardest, but taking it in the evening helps, as I can get a decent nights sleep on Wednesday. Thursday I am on my dex high and sleeping on Thursday night is difficult. Friday I start to experience fatigue (the dex down), but normally I can sleep Friday night. I am thus ready for my bike ride on Saturday morning.

[Steve Horwitz]

Re: Best time of day to take multiple myeloma treatments

by Steve Horwitz on Sat Sep 21, 2019 8:08 am

Ron's strategy with dexamethsone is the same as mine, though I take 40 mg every Wednesday night. I sleep okay that night (sometimes some night sweats), Thursday is my dex high, Thursday night is insomnia night (usually up at 4 a.m.), and then I have the dex crash by Friday afternoon.

Far better to take that dex in the evening than the morning, as this way you really only lose part of one night of sleep rather than a whole night when the high hits you at bed time.

[albertlannon]

Re: Best time of day to take multiple myeloma treatments

by albertlannon on Sat Sep 28, 2019 8:36 pm

After Empliciti (elotuzumab) and Darzalex (daratumumab) didn't work for me and my lambda light chain levels shot up to record highs, I started cyclophosphamide (Cytoxan) (10x 50 mg capsules), dexamethasone (5x 4 mg tabs) and a Velcade injection every Wednesday eight weeks ago, and my numbers are coming down. Dex has been a constant throughout my 2 1/2 years of treatment. I generally took the pills in the mornings with breakfast and faced the sleepless night, so I tried an experiment, with my doc's okay. Last Wednesday I took the pills at dinnertime with the injection in the afternoon.

The good news is I slept over 4 hours straight Wednesday night for the first time since I can't remember when. The bad news is I woke up at 2:30 a.m. with sweats and feeling awful. I felt lousy Thursday, barely functional, and I was totally useless all day Friday after sleeping 9 hours Thursday night, in 2-hour stretches, plus two naps on Friday. Somewhat better today, Saturday.

So it's back to morning meds for me next week, and I'll cope with the Wednesday night sleep­less­ness, although a couple of Benedryl (diphenhydramine) at bedtime will get me a few hours sleep.

Just my experience.

[albertlannon]

Re: Best time of day to take multiple myeloma treatments

by albertlannon on Fri Oct 11, 2019 2:01 pm

Update:

This discussion prompted me to experiment and to monitor my dexamethasone crash times, which seem to hit me about 40 hours after taking 20 mg on Wednesday, the day I have my treatment infusions. This past Wednesday I took the pills around 9 a.m., after breakfast. Thursday night, around 1:30 a.m. I woke up with the crash and had several miserable hours. Better for me, I think, to crash when I'm up, so I'm going to take my pills after lunch regularly and see how that works out,

[Victor L]

Re: Best time of day to take multiple myeloma treatments

by Victor L on Sun Oct 13, 2019 7:19 am

I am currently visiting a young family member in hospital every day, perhaps for ten days. This means a one hundred mile drive every morning and then the return trip in the afternoon. I have found it to be advantageous to keep my daily myeloma treatment in the car and to take it as I am about to start the journey home at 3:00 p.m. I suffer few if any side effect symptoms during the drive, as these do not appear until the evening, and then by 11:00 p.m. things are returning to normal and I can happily fall asleep. It is well worth experimenting.

Best Wishes All,
Victor L